You guys all know I had cancer, right?Liver cancer...Well, my Mum's cousin, Rob, is doing Dry July this year.Rob supported me and cared about me, while I was having chemotherapy.He also gave us a lot of support with our #DEXTERSMATES last year. That money supported Camp Quality.I want to support him, now.By participating in Dry July, Rob will be raising money for adults fighting liver cancer. That makes Rob pretty cool, in my eyes!

Dry July is a fundraiser that challenges you to go booze-free for a month to support adults living with cancer. It helps you get healthy and clear your head while also raising funds for an important cause.

Dry July improves the well-being of adult cancer patients by providing funds to create better services and environments for them and their families. (Read more on the Dry July website)

It's hard to believe that week three is already over. The time has certainly gone fast, and I'm happy to report back that we are noticing more and more changes in Dexter. It's such a positive and proud moment when we see these little improvements, but even more so, when the conductors and therapists tell you that they are noticing positive changes also. Dexter's stamina and endurance have increased so much.For a little boy who struggled with an hour long physiotherapy session and needed a big sleep afterwards, he can now handle a three hour intensive workout, with a 30 minute nap on the way home, and still have the energy to stay up later and later every night. He is making it through the sessions easier and happier. He is smiling more and his laughter is a common and daily sound.His laugh still stops me when I hear it. It's such a precious sound; one we waited so long to hear. Every day, he is showing more and more of his cheeky nature to the conductors and therapists, which is a sign that he is enjoying himself and feels comfortable. He still needs to be placed in the sitting position, but is lasting so much longer and is starting to self correct when he throws his head, which causes him to loose balance. His four point kneeling is getting so much stronger, and his ability to hold his head up for longer periods, is increasing. He is able to concentrate on his assisted crawling and can go for greater distances. He is walking stronger and while this still causes him some pain, his determination and stubbornness shine through! One of the biggest and noticeable things we have seen, is how proud he is of all he is achieving. After he has done something, he turns his head, wanting you to acknowledge what he has achieved. A kiss on his head ensures he will return to concentrating on his work. We are so proud of how hard he works, each and every day. It's still heart breaking to think that he has to work so hard to achieve the smallest changes, but it's not been a heartbreakingly sad week, like week two. This week, we have been able to see the positives of it.

Next week is our last week. I know already that it will be a hard week. We have to remember each and every thing that the therapists and conductors do with him, so that we can implement it all at home. It will be a sad week, as we gradually say goodbye to the small group of people who believed in our son and pushed him to achieve things that some people suggested he would never be able to do. It will be scary, knowing that once Friday afternoon rolls around, it's back on me to do all the therapy for Dexter.

But that isn't something to dwell on now. For now, I think about the way he was holding my hand as we walked down the street - and the way that he sat next to me on the couch, cuddling in to me - and the way that he kicks the back of my chair in the car - and the way that he laughs when he plays with his sister.Precious memories that will stay with me forever.Lenice

Crazy Day Friday again! Today, Dad got to experience a little bit of the silliness!I did good four point kneeling (using my hands, also) and Dad said I was happy with the crazy bear and I smiled lots!I did good drawing too, but was a little cheeky with my holding on today! I can't believe I only have four days of therapy to go....

Thursday is physiotherapy day. I like physio day! It starts with a nice leg massage, to warm our muscles up, but then it gets hard and they make me work! Does anyone know how to make sage moisturiser? It's apparently really good for massaging, but they have run out and can only get it from Hungary! And we have lots of sage in our backyard!

Today, I got to play with pegs and sand and put puzzle type pieces in different spots. Occupational Therapists are so focused on hand work! My conductor's are really happy with how I am doing.I sat for 4 songs without my arm wraps on and only needed a little bit of help! They also tried me on a different type of walker, instead of using the ladder.I thought that was funny! They said I'm cheeky... I guess they know me now!

After therapy, we went for more adventures around Adelaide.And, we had some fun lunch!Dad called me Mr San Churro.

This is not our blog post. We didn't write this. This came from the FIREFLY website. They have an amazing blog.Firefly is the company who made the Upsee and the GoTo Seat, which Dexter has and we love!

This is written by a Dad, whose world was turned upside down, when his child was diagnosed with a rare genetic disorder.Though the condition Dexter was diagnosed was different, and we found out much, much sooner... the way we were told is hauntingly familiar, and the rest of the story sounds just like ours.This is for all the Dads of kids with special needs. xxx

In December 2008 my life changed forever, my first child was born, the most beautiful and perfect baby boy.

For the first six months of his life my wife and I were blissfully unaware that anything was wrong. He had all the normal tests that babies have and everything was as it should be. Life couldn’t get much better. I was already dreaming of all his future achievements….Things haven’t panned out as I hoped and dreamt. In-fact they’re just about as far removed as they could be from those early dream filled days. In September 2010, with our little boy fast approaching his 2nd birthday we attended what we thought was going to be just another in a long line of hospital appointments with our son. This appointment was with a Consultant in Paediatric Genetics and we got the impression we were only there because our Developmental Paediatrician had run out of any other ideas.What happened that day literally turned our world upside down. The Geneticist, with very little explanation, and in a very matter of fact tone, told us that our son had all the symptoms and characteristics of a child with a rare genetic disorder.He went on to tell us that there was only a small chance he would ever walk or talk. Indeed there was only a small chance they would ever be able to find out exactly what this disorder was. My wife and I left the hospital in a state of absolute devastation, struggling to comprehend exactly what we had just been told.Looking back, the journey into the unknown world of special needs started long before that day, but it marked a defining moment in my life. Things will never be the same again for me or my family.As we approach Father’s Day on 15th June it seems like a good time to share some of the things that make being a special needs Dad, so difficult and so different, but more importantly so special and so rewarding.10 things…1. It’s tough on Dads too!There’s no point glossing over the obvious. Having a profoundly disabled child is hard; it’s hard on the entire family. Just how hard is difficult convey to anyone who hasn’t been in that position.It’s widely accepted that special needs parents are acutely affected by stress especially around the time of diagnosis. This stress is often compounded by a sense of grief that results from this loss of one’s initial hopes, dreams and expectations.The journey can be particularly hard on Dads. We males tend to bottle things up, we’re less likely to share our worries and stress with friends or loved ones. I think it comes more naturally to mums to talk about stuff and get involved in things like special needs support groups while us dads continue to keep our heads down. Pretending instead, that everything is fine so that we can support our family. Added to this is the overwhelming assumption from society that you’re a man, so you’ll be grand. All of these can make it a very isolating journey for a special needs dad.

2. Of course I’d change things if I couldI don’t get people who say they wouldn’t change anything. That doesn’t mean I don’t love my son, I do, more than words can say, but just that I would love to make things better for him.

3. Its easy to get angry and frustratedI like to think of myself as a fairly relaxed and chilled out kind of person. However, the last few years have tested this part of my personality to the limit at times.Whether that’s just from the sheer physical and emotional exhaustion of it all or from the massive sense of injustice that hangs over me.Injustice in the sense of why us – why our child? Injustice at how our society treats disabled people, regardless of how advanced and accepting most of society sees them self. A sense of injustice that I can’t physically be there for my son at all his doctors’ appointments as I’m trying to hold down a job.I get unbelievably angry with friends and colleagues with healthy children, who, knowing full well what we are going through, continue to complain about how much hard work their kids are or at other times point out how marvellously they are doing or their latest achievement. Whatever it is, its impossible to not let it get to you at times.

4. Different is our new normalNothing prepares you for having a child with special needs, but that’s not an entirely bad thing. I’ve learnt so much in the five years since my son was born, I feel genuinely privileged to be his dad.Our lives our unrecognisable now to what they were, and indeed they are unrecognisable from that of our friends who had children around the same time as us.I sometimes feel like I’ve entered a parallel universe, one that lets me view things in an entirely different light. If my son has taught me one thing it’s knowing what is important in life. Different certainly isn’t always a bad thing.

5. You just have to go with the flowLike most dads, I like to think of myself as the organiser, the leader of the pack!!On days out, holidays whatever it happens to be I used to have them sorted long in advance so I knew what to expect, what we needed to do and when we had to be somewhere.That was before, now I’m just glad if we get out of the house. As our son gets older he’s getting better, but for several years his severe sensory processing disorders meant that no matter how well we planned something, it could be over before it began.It probably sounds like a bit of a contradiction to point 3, but having a child with special needs helps get things in perspective. Now we just take things as they come, if the day goes to plan then brilliant, if not then there’s always another time!

6. It can restore your faith in humanityNo one demonstrates this point more than our youngest son. He was born around the time we received the diagnosis from our geneticist, which in itself was terrifying. We worried that he too would be affected, but thankfully he wasn’t and he’s now doing his bit to restore my faith in human nature.He has grown up knowing nothing other than his big brother being profoundly disabled. He’s only three, but ever since he’s been able to walk he’s been looking out for his big brother. It’s not anything we’ve done, infact I’d say at first we probably went out of our way to hide our eldest’s problems from him in some misguided attempt at protecting him.We didn’t have to – as he continues to grow and develop, so does his sense of kindness and love towards his big brother. It’s a beautiful thing to see and sometimes pretty hard to believe. Getting to witness this inbuilt human kindness is something very special and something very few will have the privilege of seeing.7. The awkward silence (and the screaming inside)I’m sure every special needs dad has been there more times than they care to remember.On the rare occasions now, when I venture out on a ‘boys night’ with friends who I’ve known all my life, I dread the small talk. Its almost like everyone is dancing around the subject. But when it does come, I just want to scream.Friend - ‘How’s he doing?’Me – ‘Brilliant, in his own wee way…we’re really pleased with how he’s coming on.’Friend – ‘Oh right, brilliant. So has he started walking and stuff then.’Me – ‘No, no, we’ve managed to get him to stand for a few seconds without holding him’.Then it happens, the awkward silence, followed by the dawning realisation on their face that they have absolutely no idea what is going on in my life or what it means to have a disabled child.Friend ‘Ah, ok that’s good he’s doing well then, my six month old is standing on his own too, another beer then….’8. It’s not true, you don’t get used to no sleepI have no idea who came up with this nonsensical idea that parents get used to living with no sleep. I can only guess it was someone who had a child that maybe didn’t sleep that well for the first twelve weeks of their life. Tough as that may be and yes you probably do get by on very little sleep over a short period like that, try doing it over many years, with no end in sight.Add to that, the fact your child isn’t a 10lb new born that you can carry around in one hand, they are a 2 stone five year old, with low tone meaning they have no way of supporting them self or of taking their own weight when they are up all night screaming in agony with something associated with their condition.Further still, your child is five, so people in work or elsewhere don’t really go easy on you like they would if they knew you had a new born in the house.So the next time you see a special needs parent struggling or moaning about being tired, please don’t say something daft like ‘oh yeah we had that when wee x was a baby…’9. It’s a love like no otherMy son has never said a single solitary word to me, neither is he likely to. We will never go to the pub for a pint together, we’ll probably not manage to get to many sporting events together, certainly not in the ways I’d imagined when he was born. But for all this I love him more than life itself, I think I’m probably over protective of him, but I’ll make no apologies for that. He cant speak for himself, so that’s down to me, his mum and his little brother. I’m a dad on a mission and I’ll do everything I can to make sure his life is as good as it can be.

10. I’m one of the lucky onesRegardless of everything I still think I’m one of the lucky ones. My little boy brings so much joy and love into our lives, and his smile brightens up the darkest moments. I know that in his own wee way he’s happy and for me that’s all that matters.Taken from the Firefly website (with permission)

Now, this is pure cheek!If you have a gazillion dollars, and you need to off load some before the end of the financial year... well, we've got to get a new car...It's going to have to be a van, and then, it will need to be modified to suit Dexter and his extra needs. We're looking into the Hyundai iMax, because we just can't afford the Volkswagon models. It will cost at least $40,000 for a second hand one, with modifications.

You don't have a gazillion dollars? Oh well, never mind!It was worth a shot!Sloppy kisses xx

Today was Day 1 of Week 3 of my Conductive Education therapy in Adelaide. I'm already half way through the therapy! Dad took me to the Future Footprint Center today and I showed off how good I am getting at sitting. He was very proud of me. And I told (showed her, with the book) the speech therapist that I wanted to go home, but I was just tricking, I was hungry and ready for my lunch! I'm so cheeky.Do you like how well I am sitting?

In the afternoon, we found a park. It was the best park I have ever been to! It was very accessible, even for me! It was very disability friendly. There were so many fun things for me to do at that park, including riding a high backed, seat belted flying fox seat! Thanks for the great park, Pelican Point!My Mum, my Dad, my sister and me all had fun on the swings, together!

Nanoo is with us this week. She hasn't been to Adelaide before, so we had lots of plans. But the weather is not being nice! It's cold and raining and stormy! So today, we took her to the old gaol. I wanted to leave Charlotte there, but they wouldn't let me!

Do you love our matching pants? I think they are cool!It was so crazy windy at the water, today.Nanoo was nearly blown away - but the sky was beautiful!

I'm back at the Future Footprints Conductive Education Center tomorrow.I'm halfway through my time there...I'm learning so much.

As expected, Week Two at the Future Footprints Conductive Education Center has been another big, and hard, week. What were once considered potentially unreachable milestones for Dexter, have been reached.Dexter has been able to sit, on his own, without throwing his head back constantly and maintaining balance, for unknown periods of time. Where once this sitting would be counted in seconds, now, it's just something that he seems to have grasped.Dexter still needs work, and needs to be placed in the seated position, but the strength he has shown in this one movement is amazing. He has been able to maintain being on all fours for maybe 20-30 seconds. This doesn't sound like long at all, but for Dexter, this is a mammoth effort that needs to be rewarded. Even when he is receiving minimal support, either around his hips or under his arms, he is maintaining the position and not collapsing. Dexter is even holding his head up higher for longer periods of time.He is reaching for objects and holding on. He is wanting to play with things when he finds them. He is pulling us in for hugs and turning his head to find us during therapy, to show how proud he is of the work he is doing.He is giving us kisses, lots of kisses. He is 'talking' more, smiling lots and learning to laugh.He really responds well to the conductors and therapists, and they all try so hard with him. It's been lovely watching the bond develop over the last two weeks. Dexter is like any three year old, and wants to impress the people who are helping him. He gives cheeky little smiles and really laughs at them.He has been giving sneaky 'kisses' on hands.... Teeth sometimes come through! And he likes to snuggle in for a cheeky cuddle before starting the hard work! It's not always happy times though. The walking still hurts him and causes him to really cry.The therapists seem to think it is associated with the arm wraps. This makes it hard - the arm wraps are helping him, because while wearing them, he doesn't have to concentrate on keeping his arms straight, but they are clearly causing him pain and discomfort, which is hard to watch.He tires easily still, and this causes his head to drop, or he gets distracted and throws his head back, both causing him to loose balance. He is too tired to continue the work at home. He is no longer drinking as much as before. I've put this down to too much stimulation with the sippy cup and holding on and drinking. Holding a cup, drinking from it and drinking more independently was one thing we had hoped to work on, but we have had to sit back and realise that maybe this isn't an option at the moment. Dexter needs to drink, this we know. We can't have another hospital visit, like last year, caused by pooing problems. This is a problem which can be prevented, if Dexter drinks enough. Maybe, he just needs to continue drinking from a bottle, for now.

Above all, this week has been an emotionally hard week.We are certainly seeing improvements. They may only be small, and perhaps not noticeable to everyone, but we are seeing them. This experience at the Conductive Education Center is also making us face the reality of the severity of Dexter's cerebral palsy. Small movements that we take for granted cause Dexter to grimace in pain, and take so much concentration - it's really not fair. I hate cerebral palsy.It's been tough on me, as his mum, this week. The things the therapists are doing with him seem so simple, and easy to implement into everyday activities. It's made me realise I should have been doing things like this, right from the start - but I didn't know what to do. I keep thinking how easy it will be to take these simple activities and exercises home with us, but then honestly wonder... How I will have the time? Three hours of my physiotherapy, occupational therapy and Dexter exercises a day is do-able - but I have an 18 month old who needs stimulation and needs time spent on her, and then I have a baby on the way...

And this makes me sad for what Dexter is potentially missing out on.

Please don't misinterpret this - I don't want pity, and I'm not asking for help. I'm just being honest.

There have been a lot of tears shed this week, and I know there will be many more to come. I'm so glad we have been fortunate enough to have the opportunity to take part in this great therapy.Lenice

And, from Dexter:At the Future Footprints Conductive Education Center, they call Friday 'Fun Day Friday'.I call it 'Crazy Friday'! The therapists have so much energy, and they make me smile a lot! They make it a lot of fun for me, so it's easier to work hard for them.I'm concentrating really hard in this photo. I am lifting my arms up and down, and holding on to the maraca.I just wanted to shake it!(We'll be busy when I get back, Zoe! xx) Happy weekend, everyone. xx